12/21/2010

More about today

Posted Dec 21, 2010 2:07am

As I posted earlier, the news was not all bad today. It was still wait and see, but the orders have been sent in to the old dialysis center in the event Walt begins to show symptoms of needing it. They said with the Holiday coming up, and since our local hospital doesn't and can't treat dialysis patients that they wanted to have orders so that Walt can call and have treatment if he needs it. Our local hospital is just not equipped to handle Kidney patients. There is no local Nephrologist so it's either Chico or Oroville and either way, it's about 45 minutes away.
If and I say IF Walt goes into treatment at RAI (his old stomping grounds) he'll need to be treated in isolation. I think I mentioned that before but it's nice to know he won't be exposed to all that. Another good thing, is he won't be liquid restricted. His kidney is functioning in terms of urine output, just not riding the body of all waste products. You know you've been married too long when you ask your spouse how their urine is.

Walt and I have been through a lot of ups and downs. All in a span of 2 months in 2004, Walt started dialysis, we lost a infant niece and my Mom had her first serious stroke and was subsequently diagnosed with lung cancer. I share this to point out the selfless man Walt is. When my Mom had her cancer surgery, he sent me away to stay with her, to be by her side.. he said "I'm stable, your Mom needs you". Shortly after that surgery, my Mom had a paralyzing stroke and he worked in the summer heat to build her a ramp to be able to get in and out of her house. We've taken these things in stride and accept what is thrown at us. Not a 6 months later, we were asked to foster an infant family member, Walt, without hesitation said "of course". I am just amazed at his ability to give and give and keep his head up and continue to fight.

From the news earlier today, I got the distinct impression that the transplant team fully expects that the procedure did in fact work, but since Walt's kidney function is so low, it's taking a while to clear out the dye and the dye is causing his rise in creatinine. Since the other values from the kidney are looking okay (except the potassium) that's what makes me feel hopeful. He had 2 slight rejection episodes and it just doesn't seem like enough to damage the kidney that much. So, we are back to cautious optimism - but ready for anything. And, again the dialysis orders are in place due to the Holiday... they don't want him to have to be inpatient during the holiday.

I took Joe out for a hair cut, as I think it had been about 10 weeks since his last one. I just have not been able to find the time. I took the kids out of the house so that Walt could nap. When we returned, I could hear Walt snoring from the hallway. And you can mark my word for today only... I was very happy to hear him snoring!

We made Christmas cookies tonight (the kids and I). Joe wore about 1/4 cup of flour, and Kasie wore about 4 Tbs of frosting - yes, the ones I mixed with food coloring. We had to eat several of them to make sure they were safe, I think they passed our quanity..er I mean quality control.

The kids are thrilled for Christmas and they don't know their big brother is coming home. They will be uncontrollably excited tomorrow night, not sure if I'm up for that but the nice thing is I can get away for a few hours tomorrow night for some shopping :-)

We got a light layer of snow tonight, and maybe more tomorrow. What a thrill to have snow on the ground for Christmas.

I can't thank everyone enough for your support, your words of encouragement, your prayers, your visits.... it means so much and I was reminded today that it tells me I am not alone.

Keep yourselves warm, love each other and enjoy your wonderful moments together.

~Susan

12/20/2010

update to creatinine levels

Posted Dec 20, 2010 6:24pm

Okay, so the RN called and the creatinine is up to 6.2. The potatsium is also high, I don't know how high but all the other numbers look good. Walt has eaten a lot of bananas over the last few days due to the cramps so that doesn't shock me.
The plan is, set up dialysis but no need to start unless he starts to have symptoms. They want to avoid an inpatient episode. The up side to that is that dialysis may only be temporary, and the kidney may 'kick in' as the rise in creatinine may still be from the procedure.
We retest, and retest and take it one day at a time. He looks less retentive today, his ankles are good, his eyes are only puffy when he first wakes up.. but so are mine!

Anyway - that's all I have for now. Brad (BJ) is coming home tonight. This will take a lot of stress from me, as we will have another adult in the house :o) and he'll be home for Christmas!

More later as we find out more...

Thanks for they prayers, good thoughts, and notes of encouragement.

~Susan

12/20/2010

no news

Posted Dec 20, 2010 4:53pm

sorry, no news yet - I put in the request to the RN to text me with the results as soon as she can. Today is clinic day for the transplant team, so it may be a bit longer :-(

12/20/2010

Another quiet day

N

Posted Dec 20, 2010 12:24am

Today started out gloomy and rainy outside, and the mood didn't get a whole lot better inside. It was a day primarily spent inside watching cartoons and little football.

We got a break in the weather where the sun came out and the kids quickly put on their shoes and ran outside. Joe jumped on his wet bike seat and Kasie found the muddiest part of the yard to jump in.

Since we've taken 5 or so trips to Sacramento in the last 2 weeks, I used the break in the weather to sort of organize the car again. There were water bottles under the seats, coats left behind, and the extra soda cartons that I just haven't found the time to bring in.

I think Walt and I have now come to terms with the strong possibility that he will be going back on dialysis. When I see him as sick as he is now, I wish is was already set up. Earlier today, he looked like he was so tired, he was puffy in the face, his ankles are still swollen and he's fighting the muscle cramps. He gets cramps in his legs pretty bad, enough for them to wake him out of a deep sleep. He got a little nap in this afternoon.. in his favorite spot - right in front of the wood stove.

Our oldest son is on stand by, and ready to come home if we get the word that dialysis needs to start. It will be nice to have another adult in the house. When we have to leave at a moment's notice, it's good to have someone here to watch after the kids and know that they are in their own beds. Our house is small, but we make the best of it. We bought the house when we only had 1 child, not expecting to have any more.

So, tomorrow is what I would consider the telling day. Walt has stat labs in the morning, and he'll go around 9am. He has to do labs at 12 hours after his last dose of Prograf.. they monitor that level as well, so it's a coordinated effort to make sure he's not registering too low, too high - the 12 hour mark is very important. We should hear something about his creatinine around 1pm, probably sooner but for sure by then. There is that glimmer of hope that his kidney is working, but I am prepared to hear whatever news we get. I say that now, tomorrow may be a totally different story. Walt is staying strong and I think he's come to terms with the prospect of beginning treatment, but this time it will be much different. When he is hospitalized, he always has a private room because his immune system is suppressed. He can't be mixed in with people who are contagious, and the dialysis center is crawling with microbes.

Anyway, we'll post the results as soon as we hear anything.

Here's looking to a positive week.

~Susan

12/19/2010

To a Ho Hum Saturday

Posted Dec 19, 2010 4:33am

As Susan pointed out, today has been a of being in PJ's till 3PM. The Rain and windy weather has provided all the gray outside and and some on the inside here at home. I do nap during the day as Susan pointed out that may have something to do with not having a good nights sleep. I find that I may fear NOT waking so I nap instead, from which I always awaken. I fear sleepapnia the most. To stop breathing is just plan scary my snoring got less but I have noticed that I fight for a breath in the middle of the night sometimes. If it's like 2 or 3 AM I will generally stay up and watch TV, mostly Discovery SCI Ch (284DTV) or my personal fave is Boomerang or Cartoon network to get my mind off that feeling.
I'm still a big kid at heart. Yes, a cartoonaholic as it were.

Am I scared about going back to dialysis? Yes. Yes I am. The thing about it is the treatment time and the need to be isolated from the other patients. Even though my kidney is not doing well, I still have a suppressed immune system and take meds so the organ is no rejected. There is still function as to urine output just not what it should be. I need to be kept separate from

It is what it is. Bitching about it, gains nothing. It is a waste of time
and energy. Energy is best served by using it to get through each day, Lord willing.

Will give the page a gingle on Tuesday..............Walt

P.S. Thanks everyone for your support, thoughts and prayer. Jill and Christine;
Thanks for yours and the teams support of Susan. She has been my rock through all this and while I can't pick the phone and tell the "team" how I feel about the generosity, through Susan's affiliation it is such an honer to know everyone though it is by your words and Susan's relay to that end that I feel everyone on the UPCT and PHS have been great. If you could relay a word of thanks on my Family and my behalf as appropriate, I
thank you, and Happy Holidays to all!!!

12/19/2010

Somber Saturday

Posted Dec 19, 2010 2:24am

Well, I would be lying if I said the house had a lot of optimism today. Walt was sleepy most of the day, although his color looks good he's just tired. We can contribute it to him not sleeping well but I think that's wishful thinking.

I had a minor breakdown today. Since the day we found out that Walt's kidney was failing, I've had this sick feeling in my stomach. It comes and goes but it's there. I left the house today to go to the store by myself and found myself crying like a three-year-old. You know, the kind where you take a bunch of short, rapid breaths in but the exhale lasts forever. Yep, the seriously uncontrollable crying.

Walt is obviously holding water, his eyes are puffy, his ankles are swelling.. it's just obvious that he's overfull of fluid.
He mentioned earlier tonight that he could taste the exhale of ammonia, which was something he tasted when he was on dialysis. Not sure if that's a result of the increased blood values or just that he thinks dialysis is right around the corner. When he told me that we hugged and he comforted me! It really should have been the other way around but he's certainly taking this whole thing much better than I am.

I remember back in 2004 when we were told that Walt would start dialysis treatment and I was devastated. We had driven to the nephrologist office in separate cars because I met him there after work. I felt so alone driving home, but I called my Mom immediately. It's like when you tell your Mom, it makes things more bearable. That feeling, that day feels like just yesterday. I talked to my Mom today, but she didn't talk back.

Today was certainly one of my weaker days, I put on the face for the kids but I could have done a better job. I did a little (very little) Christmas shopping and I just couldn't seem to muster the energy to do much searching or thinking about wrapping etc.. Walt consoled me today which is a little backwards, but he patted my back and said "I've been down this road before, I know what it's like". I can't believe his strength.

Nothing else to report today, we won't have definitive results until Monday afternoon but I'll update with how he's feeling if he doesn't beat me to it.

Hug your loved ones, tell them you love them and don't wait another minute holding on to things you want to tell them.

~Susan

12/18/2010

More about today

Posted Dec 18, 2010 1:38am

The kids had their yearly Holiday 'sing' at school today. Joe and his Kindergarten class sang and signed Twinkle Twinkle Little Star. It was adorable. The stage full of 5 year olds was quite a sight. Joe decided he wanted to wear a shirt and tie to school today instead of a Christmas sweater, so the shirt and tie it was. Who am I to crash a guy's style?
Kasie and the 4th grade class sang Feliz Navidad. She stood up there so tall and proud and not only sang every word but smiled the whole way through it. She is a performer I'll tell you! She got to wear high heals to school today (okay, they are actually a wedge but she felt pretty darn special).

As my earlier post shows, the creatinine level is increased to 5.9. He's up almost 2 full points since last Monday when the procedure was done. I'm not sure if this is completely expected or not. I know we expected the increase but I don't know if it was more than what's in the expected range. The BUN has climbed also up to 67 which is about 3x what it should be. Phosphorus is climbing as well, these are all very clear signs of kidney failure. But, the one Nephrologist who is normally ready to admit Walt at the slightest temperature change said 'we wait'. I'm not sure if they are watching the numbers closely thinking they will go down, or trying to push the envelope so that any type of treatment is put off until after Christmas. I'm sure it's not the latter since they are trying to protect his health. But of course, I always wonder.

I have to hand it to Walt, he is staying steady and strong. I can tell his is disappointed at all the results and is doing everything he can to turn this thing around. He's always been such a trooper, not complaining about the poking and prodding. He takes his meds like he should and makes the adjustments as told. He's putting on a very strong positive presence and I admire that so much. I am reminded every day why I married him.

We decided that given the news we got today, we needed to cheer ourselves up and go searching for Christmas displays. We saw some pretty houses but nothing spectacular to note. It's obvious that the economy has many people cutting back. We do go to one house that combines music to the lights and it's just an amazing display. In pure Pennington fashion, we showed up at 9:10 and the display stops at 9:00. We will try again tomorrow.

Anyway, that's all I have for tonight.

~Susan

12/17/2010

fridays lab results

Posted Dec 17, 2010 8:48pm

Just a quick update - creatinine is up to 5.9 (normal is .9-1.3) not the direction we wanted but the increase is slowing down. More labs Monday and we'll take it from there.
More later.
~Susan

12/16/2010 Susan update

Yo-Yo day

Posted Dec 16, 2010 8:02pm

No, not the duncan kind. I've talked before about the ups and downs of this journey as we go through the weeks, but today had it's own ups and downs.

We were somewhat hopeful that the lab results would show a slight increase in creatinine, but it was up to 5.3 which is about .7 more than I expected to see. The BUN is holding steady at 57 or so, which is still high but it's not climbing.

I got the lab results via text which was pretty tough to look at, and had to be the one to tell Walt. As I said, we were expecting bad news, but not quite that bad. We were asked to come to clinic right then and I simply asked what's the point, what's the plan? The response was "the plan is to start dialysis". So looks like I was not too far off on my estimation of when it would start. After further discussions with the director of transplant center, she didn't expect to see his numbers drop right away. The new plan is to drink lots of water and continue to test. Personally, I don't think his numbers will change drastically until next week.
Walt looks better today than I've seen him look in weeks. He says he feels better too, in fact he didn't nap all day so that itself gives me a little insight as to what's going on inside.

We've decided not to tell the (younger) kids exactly what's going on until after Christmas. There is no need to spoil one of their favorite days. What they know is that dad has to go to the lab a lot, he goes to clinic a lot and that's it. He puts on his happy face, musters the energy to be upbeat with the kids and so will I.

Walt is doing his best to drink as much water as he can, which could really impact his numbers. He's like an overfull sponge, but he continues to drink. We have agreed to approach the next few days with cautious optimism.

I wanted to get this posted before the kids come home - cause that's the end of the health stuff for today. :o)

Enjoy one another!
~Susan

12/16/2010 - Walt update

Labs are back (;0(

Posted Dec 16, 2010 12:51pm

The first set of labs have been returned and I have reached stage 5 kidney failure. While this news is not anything we want to hear, I will not be starting Dialysis as of now. The procedure has not had enough time to show a trend of the Creatinine level. So for now we or I just need to keep doing labs. Just pray it goes down. I would be happy with a 3. The Kidney wont last as long but it puts off dialysis for a few years.

12/16/2010 - Walt update

Yea! I can make updates too

Posted Dec 16, 2010 12:13am

Susan told me about 10 mins ago that my daughter told her, she wishes to have the lab, surgical procedures and all the other bad stuff that I go through and endure the down side of all this stuff for me. I am truly blessed to have my daughter do that for me. I am speechless beyond that.
Thank you one and all for your well wishes and prayers. They go a long way to help ease the stresses of the day. THANK YOU!
Happy Holidays to all.

Walt

12/15/2010

No new news

Posted Dec 15, 2010 11:26pm

The RN ordered stat labs yesterday, and Walt had a few things to do today, so his labs were late. He had a Dr. Appt with his PCP, needed to order some meds, and tried to pick some up from the pharmacy, pick up this child, pick up that child... so very busy trying to make up for the last few weeks of neglecting stuff.

We haven't received any news from the lab results as we expected, but since he didn't do his labs until about 1 pm or so, we figured we wouldn't hear anything until later tonight.

The last few weeks have taken quite a toll on us, all of us - kids included. We're functioning with less sleep than we need and we're hurrying up to wait and believe it or not, we've never been closer. Normally this kind of stress would make our house an angry circus but for some reason, we all have this resolve that we're going to get through it, and all come out in one piece.
We've tapered down the Holiday activities this year since we have all this other stuff going on - this is not the year any of us want to be sick, and big gatherings, outings and such are a great start to any cold/flu.
The kids were great about getting their flu shots this year. Walt can't have the flu shot so both the kids agreed to get the shots to make sure we don't infect Walt. I try to get one every year, but the first 'drop-in' flu clinic I found, Kasie and I rolled up our sleeves and got our shots.

So, for tomorrow we expect some results. I don't expect them to be good, so I don't think I'll be too surprised if they tell us his creatinine is up to 4.6 or so. I will be more interested in the lab results from Friday's labs. Of course, I'm not the doctor but I would think Friday's would be more insightful than today's. I guess that's why I didn't go to Medical school.

I hope you all are warm and dry, enjoying your families as much as I am enjoying mine.

~Susan

12/14/2010

Still resting

Posted Dec 14, 2010 10:38pm

Walt did his level best to rest most of the day, although I would be lying if I said he needed a lot of encouragement. I can tell his Creatinine and BUN are high because he just has no energy, feels crappy and wants to sleep all the time. I can only imagine how he must feel. I equate it to having poison running through my veins and that's a little unnerving.

Technology is a wonderful thing, from this website to cell phones. The transplant coordinator and I keep in touch mostly via text and she sends orders to me. LOVE IT. We got word this afternoon that the Nephrologist (kidney specialist) wants him to do 'stat' labs tomorrow morning. I asked the RN if they expected to see improvement or if they were looking for declining function. She said both but that she expects the creatinine should be elevated due to the dye from yesterday's contrast. So, we should get results sometime tomorrow afternoon. That will determine if we need to go back to Sacramento on Thursday. Honestly, I don't know why we would have to but that's the plan. The way they were talking last week before the ultrasound, there was nothing really to do except monitor his numbers and provide the local dialysis center/nephrologist support.

I don't really think we'll know anything positive until next week, I think if we hear anything soon, it will be not so good news because the kidney function can't recover that quickly, but it can decline that quickly.

Kasie told me today when she got home from school that she wishes she could do some of the tests or surgeries for her dad. She said "Mom, he's been through so much". Wow I really didn't know what to say. Sometimes I think my kids are sad about their dad's illness but then I think back, and the two youngest have never known anything else. Brad, the oldest got to have his dad well.. and he's old enough to understand what is going on and how well his dad can be.

If this procedure worked, we are planning a camping trip which is something we haven't been able to do since 2004, when his kidneys failed. Being outside, enjoying the surroundings is something we really miss. We couldn't go this summer because of his immune system, so by next summer his immunosuppressant drugs will be decreased.

So, we wait again.
We're all going to cuddle up and watch a Charlie Brown Christmas special and forget about all this health stuff. It's time for family now.

Good night!

~Susan

12/14/2010

Posted Dec 14, 2010 1:01am

What a day it's been!

As I posted earlier, the Radiologist was less than optimistic about improving Walt's renal function with this procedure. In fact, he was pretty positive that this procedure would worsen his condition. His diagnosis was marked ESRD again, which we haven’t seen in 10 months. It was a little alarming.

The procedure required a contrast dye which can in rare cases cause renal failure in patients with healthy kidneys. So, in Walt’s case the possibility of complete renal failure was something we needed to consider before we moved forward. We both were under the impression that if this wasn’t done that dialysis would be right around the corner – like 4 to 6 weeks or so. It was a scary decision, but Walt felt it was best that we try even if it made the inevitable happen sooner. They did all they could to lessen the impact on the transplanted kidney which involved using a diluted dye and adding bi-carb – I assume it’s a balancing agent much like alka-seltzer. .

We insisted that he speak with the transplant team, specifically the vascular surgeon who reviewed the preliminary results. His bedside manner never improved in my opinion, but Walt said he was very personable in the room. My sister told me a long time ago, you don’t really need a doctor to have a good bedside manner, you just want him/her to be able to do their job.
I was never able to speak to the doctor, as with my luck, the one time I left to use the restroom, he walked in. Originally, the doctor said if he put the coil in, it would completely block the vessel and therefore stop any blood from getting into that portion of the kidney but my understanding was that blood was bypassing the kidney and going back into the venous supply without being filtered. I couldn’t seem to get that point across to the doctor, or ask it in a way that he understood my question.

The aneurysm was evidently pretty large and it may very well be the case that a lot of the blood supply was bypassing the kidney. Walt will go in on Friday for a renal panel (blood tests) to see what his creatinine shows. We are looking for something 4.0 or less.
It will be a tough few days awaiting the tests to see if this did the trick.

I’m sure I droned on and on so it’s probably time to pour myself into bed.

Much love
~Susan

12/13/2010

doing well

Posted Dec 13, 2010 5:23pm

Walt is still resting comfortably. He's restless which is normal. It's hard for him to lay still for any amount of time, let alone lay flat. I think he has another hour or so of flat then they can begin raising his head. Man this has been a day!!!

No word from the doctor yet

12/13/2010

procedure done

Posted Dec 13, 2010 3:58pm

Walt is in recovery, resting well. They said the procedure was successful, I will measure success via lab results.

more soon

~Susan

12/13/2010

longer than expected

Posted Dec 13, 2010 3:18pm

well, they told us this procedure would be no more than 2 hours. it's hit past the 2 hour mark, so although I am very nervous, I am hopeful they found something they can fix.
The plan was to insert a coil to embolize the abnormality, preventing blood to pass through. I had it a bit mixed up, and thought it was a blockage that needed to be opened up.

Sitting patiently.... well, sitting anyway
~Susan

12/13/2010

procedure update

Posted Dec 13, 2010 1:49pm

We arrived on time for the 8 am procedure only to find that the doctor that Dr. Ward (the vascular surgeon) suggested, was really not the one doing the procedure.
The Dr. doing the procedure now is Dr. Marshall. When Dr. Marshall came in, he advised us that he was less than optimistic that this procedure would be helpful, in fact it may reduce Walt's kidney function to the point of needing dialysis sooner.

Anyway, we decided to go ahead with the procedure feeling that Dr. Ward and the transplant team kinda know what they are talking about, and not that this doctor doesn't, but we trust the transplant team and have to hope for the best. At this point I am less than optimistic that Walts' renal function will improve greatly.

More soon

Susan

12/13/2010

procedure update

Posted Dec 13, 2010 1:49pm

We arrived on time for the 8 am procedure only to find that the doctor that Dr. Ward (the vascular surgeon) suggested, was really not the one doing the procedure.
The Dr. doing the procedure now is Dr. Marshall. When Dr. Marshall came in, he advised us that he was less than optimistic that this procedure would be helpful, in fact it may reduce Walt's kidney function to the point of needing dialysis sooner.

12/13/2010

procedure tomorrow

Posted Dec 13, 2010 12:36am

Walt goes in for his procedure tomorrow at 8:00 am. It's much like angioplasty where they go in through the leg and up to the kidney. They'll insert a coil to open the vessel so that blood can freely flow into the kidney. We are hoping that this should solve the elevated creatinine and BUN numbers. I say hope because nothing is for sure.

Walt and I just realized that out of the 4 times we've spent the night in this area (over the last 3 years or so)that we've been right across the street from the Governor's mansion. We went to 'Brew it up' which is a great brewery that makes fabulous burgers. Neither one of us drink but found it a bit uncomfortable to note that I was wearing my Sierra Nevada Brewery shirt. It smells awful outside and you can smell the brewing exhaust from about a block away.

I'll post updates tomorrow as he comes through the procedure, as well as when I get him home. I expect they will have him laying still a little longer since we live 2 hours away from the hospital.

Hope everyone sleeps well, I plan to!

~Susan